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#196656 - 06/27/18 03:08 PM 2nd chemo delayed  
Joined: May 2018
Posts: 20
embishop Offline
Member
embishop  Offline
Member

Joined: May 2018
Posts: 20
Ontario, Canada
I am disappointed that my 2nd chemo has to be postponed from tomorrow to hopefully next week. My neutrophils are at 0.8 and they're supposed to be at 1.5. I think this means that I will be getting only 2 chemos (Cisplatin) instead of 3. My chemo doc said there is evidence that 2 chemos is better than 1, but there is no evidence that 3 chemos is better than 2. Is it okay to ask on this Forum if others have heard something like that? I'm thinking of it as a question on other people's experience, not a medical question. He also said that probably 70% of patients only end up getting 2 chemos. He also said that the lower dose once weekly is only really used for older patients. I'm 54, and I guess that means I'm young! There's a smile for today.

On a positive note, tomorrow will be the halfway mark for rads, 3 weeks. Radiation side effects are in full force I guess, significant pain on swallowing, and omg I woke up in pain 3x last night due to sores on my tongue. I've had the Princess Margaret mouthwash just since Monday, and although it's helpful I wouldn't call it magic that's for sure. I also have some hydromorphone pills still from surgery and they told me today it's okay to take them, and they're sending in a liquid prescription for me as well. I do have a feeding tube in but I hope that it ends up being precautionary only and that I never have to use it. I will say though that on the weekend was the first time I thought I would need to use it before this is all done. I am monitoring my nutrition intake carefully, especially calories and protein, and I am just starting to use the recipe for the high calorie chocolate peanut butter shake. It's too hard to eat anything that I can't just swallow right now. The stupid tongue sores make chewing almost impossible so then I chew a bit and swallow and that swallow is pretty bad.

Anyway I've been feeling kind of down for the last few days, but I'll be okay. Tomorrow is halfway there. Yesterday I ordered 3 CDs I wanted, music cheers me up.

That's all for now.

(Edited - maybe this should be in the Currently in Treatment Forum? Sorry, I'm not sure.)

Last edited by embishop; 06/27/18 03:09 PM.

Mouth/tongue cancer dx Feb 2018.
Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection.
Tumour 2.5 cm, 0.8 cm deep.
Histologic grade G3 Poorly differentiated.
3 of 25 lymph nodes involved max size 0.6 cm.
pT2pN2b (stage 4a)
Chemo Radiation started June 7/2018.
#196657 - 06/27/18 03:15 PM Re: 2nd chemo delayed [Re: embishop]  
Joined: Oct 2012
Posts: 997
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 997
Toronto, Canada
You will find that quite a few people on this forum had to forego the third chemo. My husband had to because he developed serious deep veined thrombosis. His neutrophils were so low at that point that he couldn’t even get the medication fo the DVT. It did recover after a few days. The chemo doctor at Princess Margaret Hospital, who is a leader in her field, told me that he would be alright with only two chemo treatments. I also met other patients at the chemo unit there who could not get the third chemo because of the low neutrophils.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#196659 - 06/27/18 04:24 PM Re: 2nd chemo delayed [Re: embishop]  
Joined: Jun 2013
Posts: 210
KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 210
alabama
Mine was the six weekly treatments, and I was in my later thirties ... guess that was old? LOL. I may have missed one, though, given weather issues and such, and for sure some got rescheduled.

Congrats on making it halfway!!!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
#196662 - 06/27/18 06:07 PM Re: 2nd chemo delayed [Re: gmcraft]  
Joined: May 2018
Posts: 20
embishop Offline
Member
embishop  Offline
Member

Joined: May 2018
Posts: 20
Ontario, Canada
Thank you for that input gmcraft. I am up in northwestern Ontario so chemo and radiation is here but they couldn't do my surgery here. It's nice to hear of other experiences in Ontario since there can be differences between countries. PMH is great, I was glad in the end to have to go there although initially I wished I could have been at home for surgery too. Thank you also for continuing to share your support as a family member; my condolences on your husband's passing.


Mouth/tongue cancer dx Feb 2018.
Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection.
Tumour 2.5 cm, 0.8 cm deep.
Histologic grade G3 Poorly differentiated.
3 of 25 lymph nodes involved max size 0.6 cm.
pT2pN2b (stage 4a)
Chemo Radiation started June 7/2018.
#196663 - 06/27/18 06:09 PM Re: 2nd chemo delayed [Re: KristenS]  
Joined: May 2018
Posts: 20
embishop Offline
Member
embishop  Offline
Member

Joined: May 2018
Posts: 20
Ontario, Canada
KristenS yes lol! I'm approaching a cutoff for 'older' now, 55 plus, but late thirties definitely doesn't qualify!!


Mouth/tongue cancer dx Feb 2018.
Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection.
Tumour 2.5 cm, 0.8 cm deep.
Histologic grade G3 Poorly differentiated.
3 of 25 lymph nodes involved max size 0.6 cm.
pT2pN2b (stage 4a)
Chemo Radiation started June 7/2018.
#196668 - 06/28/18 11:44 AM Re: 2nd chemo delayed [Re: embishop]  
Joined: Dec 2017
Posts: 14
Crapshack Offline
Member
Crapshack  Offline
Member

Joined: Dec 2017
Posts: 14
I’m 23 and also had the weekly treatments, so that can’t be right! smile

#196669 - 06/28/18 12:23 PM Re: 2nd chemo delayed [Re: embishop]  
Joined: Jun 2013
Posts: 210
KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 210
alabama
Nah, it's just that we all FEEL old when going through it, LOL. Heck, I was still getting carded if I picked up anything alcoholic for my mom (I don't drink) and I'd be out with my kids and folks would ask me where I went to school, LOL. Like, um, I finished college, worked for a time, got married and have kids ... do you mean their school? laugh


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
#196672 - 06/29/18 12:13 AM Re: 2nd chemo delayed [Re: embishop]  
Joined: May 2018
Posts: 20
embishop Offline
Member
embishop  Offline
Member

Joined: May 2018
Posts: 20
Ontario, Canada
I guess that's just the protocol at my cancer centre 😃


Mouth/tongue cancer dx Feb 2018.
Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection.
Tumour 2.5 cm, 0.8 cm deep.
Histologic grade G3 Poorly differentiated.
3 of 25 lymph nodes involved max size 0.6 cm.
pT2pN2b (stage 4a)
Chemo Radiation started June 7/2018.

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